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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 03-08-2019, 05:55 AM   #1
Mlb3815@gmail.com
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I currently see my surgeon and a pain management specialist. Should I be seeing any other specialists? I feel like hardly anyone knows about CRPS. My pain management specialist has told me my memory and cognitive issues has nothing to do with CRPS but these issues did not develop until after my post surgery CRPS. I feel like Im always in a fog. He also said my blurry vision is unrelated. I got a new prescription and everything is still blurry. Please help.
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Old 03-09-2019, 02:46 PM   #2
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Brain fog is a common complaint among people with CRPS...I have had badly declining ability to focus, remember, and read over the years. For some this is caused by meds. I do not take any meds...so that's not the cause for me but its possible that just the constant never ending pain is at the root of the issue. All the tests for other causes have come up with nothing.

As for blurry vision...while o highly recommend looking for another cause...crps CAN cause vision problems. I had intermittent blurry vision, double vision, and dizziness for about a year which was resolved when my dr put me on clonidine patches...which regulate blood pressure. CRPS is a malfunction of the sympathetic nervous system which controls blood pressure. Turns out I was so out of whack and my blood pressure was all over the place so I used the patches for a few years and the vision problems stopped. I went off them when I got pregnant 5 years ago and I haven't been back on them. I have occassional symptoms of suddenly spiking or dropping blood pressure...but not nearly as often as I used to.

My recommendation is ALWAYS to search for other causes first because...well...other causes can usually be treated or corrected. But if you exhaust all your other options then new weird symptoms can typically be caused by CRPS. I just wouldn't assume it right off the bat because often it IS something else.
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Old 03-13-2019, 10:32 PM   #3
Becca71
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I have not found one single doctor who will just simply accept that CRPS causes "brain fog." Their reasons are usually
1. Meds
2. Lack of sleep
3. Depression

But if you research yourself online, you can find multiple references to CRPS and memory and cognitive function decline. Not just on any website written by and for people with CRPS, but I have found it on professional sites and in at least one medical study. I met several people in my rehab groups not on meds who had the same symptoms. My symptoms hit rapidly during the first year while my meds were stable. I was fine... and then I wasn't.
I have always had depression and it has never caused any issues even vaguely this severe.
Brain fog, cognitive decline, word finding issues, saying gobblety gook instead of real language, I don't see how ALL of this could be caused by meds, especially as I have changed my meds over time, but the symptoms have been consistent.
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Old 03-15-2019, 09:36 AM   #4
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Becca71, My experience and opinion matches what you posted. Also, I get great sleep....GREAT SLEEP.....and most of the time. Sure, there are those nights we all have, but I am self employed and able to catch up when they happen and after I get symptoms under control. Then, for the rest of the time, I sleep until I wake up, which is usually around 9 hours each night (my meds sort of knock me out, Im sure, but regardless, I sleep like the dead!).

And....I have those symptoms you mentioned (cognitive, all of them).

Its strange to me that for those with Fibromyalgia, they call it "fibrofog" and it's widely accepted as a part of that condition. I have heard some doctors say that CRPS is an extremely advanced case of Fibromyalgia, and while I have no idea if they're right or not, this part of Fibromyalgia is also experienced by those of us with CRPS.
I was diagnosed with Fibromyalgia long before I got the CRPS, fwiw....and I have no idea if I have both conditions, because the CRPS overrides the Fibro and has since day 1 of having it....I never think about Fibro anymore even though my entire body hurts....but in all limbs I have the CRPS, so I do wonder when some CRPS doctors say the two are related.
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Old 03-15-2019, 11:53 PM   #5
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I developed Fibro a couple years after CRPS. There were some differences, IMO, but the pain was certainly not anywhere near the level of the CRPS. For me it was that the joints would hurt all over my body, while my CRPS is limited to my right foot and leg. And I would feel physically like I had been knocked down with the flu, without actually being sick. And each time it happened I would get a weird mild rash on my cheeks and neck. Etc.

I have also heard that CRPS and Fibro may be related. But heck, there is so much that they don't know about both conditions, other than they are both nerve conditions.
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Old 03-25-2019, 11:06 AM   #6
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After 6 years with CRPS I finally decided to look for a Dr who is a CRPS specialist. I've found that the pain management Drs I went to were just trying to prescribe something to cover up the pain, rather than to look for ways to manage the cause. I'm near John Hopkins in Baltimore, so I searched their website for CRPS and found Dr Raja. Only one visit so far but much better experience than going to another pain management place. He put me on Pamelor, which has been very helpful (for me) so far.
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Old 04-02-2019, 11:17 AM   #7
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Quote:
Originally Posted by Peter_crps View Post
After 6 years with CRPS I finally decided to look for a Dr who is a CRPS specialist. I've found that the pain management Drs I went to were just trying to prescribe something to cover up the pain, rather than to look for ways to manage the cause. I'm near John Hopkins in Baltimore, so I searched their website for CRPS and found Dr Raja. Only one visit so far but much better experience than going to another pain management place. He put me on Pamelor, which has been very helpful (for me) so far.
Pamelor seems to be an anti-depressant of the older variety (typical for pain management).

Now we're all different, but I have to tell you anti-depressants never worked for me; they didn't touch the pain whatsoever. I only gained about 10kg on them which is weight I could miss for my knee issue!
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Old 04-08-2019, 02:37 PM   #8
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CRPS is the worst, isn't it? Then, the fibromyalgia on top, or is it? I see so many people with both, and I read an article earlier today that talked about pain studies (this outfit is in Australia, fwiw). They are studying the brain, and have, among other things, linked the frontal cortex and GABA and, they talked about how cognitive is affected by CRPS, which is my experience, too.
I just really often do think CRPS and Fibromyalgia are linked, it all goes to the spine and the brain, and because so much is unknown, we do get really varied responses from various doctors.
One of my doctors said patients often know more about the disease and the symptoms because we talk to each other so much, and doctors could learn from the busy bees among us, lol....(scary, isn't it....we just dont know enough about this dreadful disease!)
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Old 04-09-2019, 10:47 AM   #9
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Oh I agree, patients know more about it than doctors a lot of the time! And I have Fibro too, I was diagnosed about two years in. I have read that they are related in some way. Both relating to overreactions of the nervous system.
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Old 04-16-2019, 03:58 PM   #10
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I have been recently (two months ago) diagnosed with CRPS, following three surgeries in my R UE, followed by a car accident 6 months later resulting in more UE injuries and whiplash. My initial injuries requiring surgery are work related. I am in the workers comp downward spiral of specialists and denials, etc. Anyone else trying to negotiate through workers comp with a diagnosis of CRPS? Any advice would be greatly appreciated!
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